Andrew Kolodij

Age: 9

Cognitive Age: 6-7

Therapies: Speech, OT, PT, feeding therapy and a vision teacher

Schooling: Mainstream with IEP & 1:1 aide

Siblings: Julia (6)

Parents: Nestor and Debbie Kolodij

Kabuki Symptoms:  Global developmental delay, vision impairment, dental abnormalities, short stature, intellectual delay, ADHD – Inattentive Type, happy demeanor, loves music

Andrew's Story:  ANestor and Debbie wanted children and ended up turning to fertility assistance to make it happen. Debbie was already high risk because she was 40 when she got pregnant with Andrew, so she had ultrasounds every two weeks. For the first 6 months, everything went according to plan. At her 6-month appointment, Debbie and Nestor learned that there was excess amniotic fluid. A few weeks later, at 28 weeks, Debbie had a stress test. It was determined then that baby Andrew would not make it to full-term and mom was admitted to the hospital.

 

Andrew was the Kolodij’s first baby, and they quickly learned that he was in charge when he was born at 30 weeks gestation. Thankfully, he was breathing on his own right away! He was, however, jaundiced and struggled with insulin regulation, plus had grade II/III brain hemorrhages. The brain bleeds resolved over time, but Andrew would spend 75 days in the NICU with apnea of prematurity and feeding difficulty. Nestor got the most amazing birthday gift when Andrew was discharged on his 49th birthday!

 

Once Andrew was born, it seemed like everything that happened in life up to that point was moot. Life truly began the day Andrew graced the world with his presence. Debbie said, “We didn’t know what love really was until then. I know all parents say that, and it turns out the cliché is true!”

 

Still, they were unprepared for the challenges that come with having a special needs child. But the Kolodij’s were not going to let that keep them down, they met every challenge and every obstacle head on, as they continue to do today.

 

Around the time when Andrew turned 2, Debbie was doing a mental inventory when she realized her son had been to over 50 doctor’s appointments in his short little life. She decided then that she wouldn’t focus on that anymore. She made a conscious effort to reduce Andrew’s appointments where she could, consolidate appointments and to simply drop a few of them. Over the years doctors have been added and new problems arisen, but the family handled it the way they handle everything: head on and together.

 

Andrew is currently in a mainstream classroom in elementary school. He has an IEP and a 1:1 aide in class. He loves school and learning and is excelling at life right now. He really enjoys being creative by writing his own books, making his own pretend CDs and came up with his own version of football and basketball to play during recess at school. He also really looks forward to GoNoodle videos during indoor recess. (Editor’s note: My KK loves GoNoodle too!)

 

While Andrew enjoys school, there are always difficult times for parents. One time, Andrew was supposed to talk about a “point in time” story. He chose to talk about a doctor’s appointment, which was hard for Debbie to swallow. But to Andrew, it’s all normal and he doesn’t know any different.

 

In order to deal with the daily struggle and the frustration that can come with raising a special needs child, Debbie is thankful for her support system. She and Nestor seek out other special needs families by attending special needs community events and try to get Andrew involved as much as possible. He has played buddy ball, TOPS soccer, a challenger basketball day, he’s done a weekend sleep-away camp, music therapy, karate for kids like him and anything else they can find to keep him involved in the community and grow their support system. The programs described provide opportunities to meet other special needs parents and to learn from each other. Facebook provides another avenue of support for the family, a place to vent frustrations in a safe place with people who understand.

Andrew’s Favorites: “Similar to other Kabuki kiddos, Andrew loves, loves, loves music. He knows music from the 60s, 70s, 80s, 90s, 2000s & 2010s and can identify all of it. He loves to dance and share his love of music. We noticed this love of music in him at a young age and have been using it for motivation ever since. His PT used nursery rhyme songs to motivate him, I used Wiggle songs for potty training, he gets dance parties as rewards. He also loves movies and movie characters. We play movie trivia all the time where we use "mental math" to get to the number of words in the movie title and then give clues till we guess the movie. He often brings up wanting to be a teacher someday. Sometimes it's a music teacher, sometimes other types of educator. He also aspires to write books and make movies.”

Andrew’s Relationship With His Sister: “Andrew and Julia are great together, mostly. They spend hours playing restaurant together or having dance parties. Andrew wanted to walk Julia to her class when she started kindergarten so she wouldn't get lost. Julia likes to make sure Andrew is keeping up with us when we are out shopping.”

Advice for Kabuki families: “Kabuki Syndrome doesn't define us as a family. What defines us is our family together-ness. I'm always telling my children that everyone is different and that is what makes the world interesting. That life would be boring if we were all the same. I think they get that and take it to heart. I think we should all do our best to treat our kids like we would any other child, making adjustments as necessary and going with the flow. Let your extended families do the same. There is uncertainty for sure, but you have to learn to live with that uncertainty and accept it and keep moving forward.”

Advice for parents of “typical” children: “Raising a child with Kabuki Syndrome is definitely different but we are okay. Feel free to ask us questions, share your own stories and challenges and listen when we share ours. Please treat my child as you would other children (with minor adjustments when necessary) and don't exclude him. Please realize that we are running around to a thousand therapies and doctor appointments that you probably are not dealing with so give us a little bit of a break when you can.”

How Andrew has impacted the family: “We are a strong family unit that takes things as they come. We have learned that life doesn't always turn out the way you expect it too but you learn from what it gives you and keep moving forward. Andrew is so easy going and positive and there is no one that doesn't love being around him and that makes things a bit easier to deal with for our family. We have learned things we never wanted to know, but it's all enlightening.”

Andrew made Debbie a mom and Nestor a dad when he entered this world, something they both wanted desperately. Then, three years after he was born, they added Julia to complete their perfect family. The Kolodij’s are strong, won’t back down and make every effort to give Andrew the opportunities he needs to succeed. It seems pretty clear that they’re on their A game and have this parenting thing down pat!

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All Things Kabuki (ATK) is a registered 501(c)3 non-profit corporation based out of Wasilla, Alaska. We are the only U.S. patient advocacy group supporting the Kabuki community globally. Our mission is to raise awareness, incite research, and support individuals and families affected by Kabuki Syndrome.

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